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Are we trying to not be human?

(Photo by Matthew Tkocz on Unsplash)

Mum and Maria are sitting on the veranda. Maria is in the shade of the parasol. On the table between them is a notebook with lots of scribbles.

Mum: What are you writing?

Maria: A blog post, I think.

Mum: About what?

Maria (quoting): “Are we trying to not be human?”

Mum (laughs): Pixie cuts or humanity, there’s no middle ground with you, is there?

Maria: … no.

I keep seeing more and more ways our society wants to avoid the fact that we’re human beings. That we live in human bodies. It has a tinge of desperation to it. Sometimes it gets harmful and dangerous, like a weird version of dehumanizing someone: oh, we’re not like them, they’re uncivilized and animalistic and basic, while we are modern humans who are above all that. Other times it’s almost funny, the lengths we’ll go to in our denial.

I am not a medical professional, a professional philosopher, or a goddess, so these are only my personal, humble observations. But there seems to be some basic truths to being human that there’s just no getting around. You exist in a body that is basically a sack of meat (with maybe some kind of spirit or soul or you-ness in there, too). Where you are born is a matter of pure chance. You will make mistakes. You will change, constantly, in a million different ways. There is a lot of shit you can’t control.

So, because we’re so delightfully human, we try to control everything.

We control our bodies, in hope we won’t have to deal with the messy unpredictability of having a body. If we can just do the right things, avoid the right things, our bodies will become optimized, self-running machines that never fail or bother us. Our ability, strength, stamina, and “health” will become reliable and unchanging, until we, at the respectable age of ninety-eight, suddenly collapse from a quick case of heart failure while on our daily, two hour long mountain hike — a long, perfect life and a quick, perfect death. All of this attainable for everyone, so long as we do the right things. Or don’t do the wrong things.

Food especially has become a particular Holy Grail or Philosopher’s Stone. Nobody seems to even question it, that food is now a loudly declared cure-all for absolutely everything. That the way “food becomes medicine” is mostly by not eating particular things. The “right” diet can supposedly cure cancer, anxiety, hormonal issues, lost limbs, hair loss, and ME/CFS! Yes, ladies and gentlemen and everyone else, I said cure! Just sort out your eating and your body will never trouble you again!

(I tried turmeric supplements. No, it didn’t heal my ME/CFS, unfortunately.) (Also, there’s no diet that will “cure” the things mentioned above. Please go see your medical professional for actual, evidence-based treatment).

The 2019 control craving is weirdly obsessed with purity. I always find it interesting how so many people loudly declare they’re not religious, but still strive to be as pure as possible. Who is this purity for? And who has the authority to declare that something is dirty, and that dirty is a bad thing? This kind of language is everywhere.

If you use (well, buy), the right skin care, you’ll become so beautiful that you don’t need that dirty, conceiving makeup. If you eat the clean food, you won’t want the dirty food. If you never speak your mind, nobody can ever say you’re wrong, and your reputation remains spotless. If you argue perfectly, your fights will never get dirty. If you dispose of all your unnecessary stuff, you won’t be visibly tarnished by your filthy desire for mortal means.

Now that our environment is collapsing, well, what are we to do but make sure we at least remove our makeup with reusable, home-made cotton pads, hand sewn from scrap fabric, to ease even the tiniest smidgen of our soiled, overwhelmed conscience? (or was that just me?)

With the life-changing, privileged magic of minimalism, “clean eating” (yes, in quotes, because I find that term so damaging), a proper skin care routine and vegan fish oil capsules, you can get the ultimate starting point for perfect control over your future: a clean slate.

How’s that for purity?

Except humans don’t get clean slates. Maybe once, but we’re usually too… newborn to fully appreciate it. Instead, we get history.

User accounts we made online to virtually try on a new hair style. Stupid older siblings who set the standard before we even existed (I imagine — I was lucky enough to be one of those stupid oldest siblings). Somewhere, someone has a picture of when we fell asleep with our face planted in someone else’s lap at a party, and it does not look like an innocent nap. We have scars, and old tax receipts we need to keep for at least a decade, and voices in our heads that whisper to us from the past.

There’s no such thing as a clean slate, no cure for our messy history. We know this. We ignore this. We keep trying to prove it false, our own humanity.

How very human of us.

PS: you, my readers, are amazing and I am still overwhelmed by your kindness after my previous blog post. So thank you.  Please stay human, you do it so beautifully.

To blog or not to blog

Photo by Thomas Martinsen on Unsplash

… is certainly not a question good old Shakespeare had to deal with, but I’m sure he would sympathize nonetheless. I’ve been debating this with myself (and some of my friends, poor things) for literal years now. I’ve written this very blog post at least ten times, sending it to the aforementioned poor friends, who cheered and gave me the a-okay. I then hid the text in my Google Docs, adding it to the previously written versions. But I am doing this. I am writing. I am writing this blog post right now, because if I don’t I’m afraid I’ll abandon the whole question and join Shakespeare in not writing another word (sorry, William, too soon?).

In case this post just showed up in your feed and you have no idea who I am or why you’re reading this, allow me. This is my blog. It used to be about fashion, personal style, pixie cuts, vintage clothing, body positivity, and other random thoughts. Then I stopped blogging about the fashion stuff and wrote just the random thoughts. Then I got a virus on my balance nerve, and ever since I’ve been debating this bloody question: to blog or not to blog?

For a while it was an easy question, because I was physically unable to blog. Writing in general wasn’t possible. Or reading. Or looking at screens. (Yes, that was depressing, as you might remember from my last entry here, back in 2017). 2018 was a slightly better year, balance nerve-wise, as I was able to look at screens sometimes. The problem then was that I never knew how long I could do it until I’d be overcome with nausea, dizziness, and panic because I couldn’t look at screens without nausea, dizziness, and panic.

Thus passed another year, and though I did write a little, I did not blog. As you know, I guess, if you were one of those lovely people who stopped by here, leaving a lovely comment or sending me a lovely e-mail or generally being lovely in other ways. (Thank you, thank you, thank you.)

Now it’s 2019, and the screens are still connected to nausea and dizziness and, yes, panic. Think of it like this. Writing, for me, was everything. Reading, too, of course. But writing was how I… see, it’s funny, isn’t it, that I, the supposed writer, cannot find the words to even describe how much writing meant to me.

It was like… like writing was a friend/lover/soulmate that was always there. Writing wouldn’t get all nerdy with me, then sleep with me, then ghost me for months, then sleep with me again, repeatedly, awkwardly holding my hand when crossing puddles, then leave for another country and ghost me for… well, indefinitely. Writing was different. Writing was me, and  wouldn’t do that to myself. But then I lost writing anyway. And that, my darlings, was the ultimate heartbreak. No skinny-jeaned hipster can compare, not by a long shot.

So my dilemma now is this: several days a week (in a good week), for five to thirty minutes (depending on… stuff), I am physically able to write (if you ignore the wrist pain and the always-lurking nausea, dizziness, and panic). It’s one of the few ways I don’t feel ambiguously disabled these days: I am able to sit upright and put my fingers on a keyboard. And I am trying. I write words and sentences and sometimes paragraphs, but, as I’m sure dear William would agree, writing is more than just coming up with words and sentences and sometimes paragraphs. There’s an art to it, at least if you want to write something good. And I do. I admit it, I want to use words to play your heartstrings like Kvothe himself. Otherwise, what’s the point? Otherwise, it’s just words.

But what I write these days, when it’s honest and real and me, is not something I’d recommend while mindfully eating your morning avocado toast. It’s not pretty, or pleasant. Most of the time it’s full of grief and frustration and, worst of all, earnest. Yes, some might even say depressing. They might not be wrong. Because where I am right now, is stuck in the limbo of chronic illness, and it’s not something I can make go away by visualizing a calm and smiling version of myself in zero-waste, vegan yoga pants.

I suspect this will change. I mean, it has to, because even I have my limits for depressing earnestness. Still, it’s where I am now. And most of you signed up for posts about “how to dress for your proportions” or “should I get a pixie cut?”. So you can understand why I’m hesitant to try this blogging thing again. I cannot promise to be of any use for your personal style development, because I am done writing sensible, educational posts about a well-placed seamline. And my hair is way below shoulder length, so don’t expect any pixie advice, either.

Still the question lurks at the back of my mind: to blog or not to blog? Maybe if I just blog, just write, then that whole depressing earnestness might, in time, transform into my plain old earnestness? (Because let’s face it: that’s never going away.)

So, to blog or not to blog? Is there any point to blogging in 2019? Does it even need a point? If there’s anything I’ve learnt from chronic illness so far, it’s that a surprising amount of things in life are actually rather pointless. See what I meant about depressing earnestness?

Yes, I am making the usually-horrible decision to ask the Internet for advice, because I am at a genuine loss, and based on my previous experience, you folks can be a lot more helpful than dear William. So what do you say: to blog or not to blog? And why? I am all ears.

Losing it

Image: the view from my bed.

Is anyone still reading this blog? If so — hi. Hello. I’m sorry it’s been so quiet here. I’ve been sick, you see, and not just with my usual combo of ME/CFS and mental health issues. In January a virus decided to settle in on my balance nerve, where the balance organs in the ear communicate with my brain. As a result, my head could no longer understand what was up or down, whether I was moving or sitting still. It’s such a small thing, such a small part of the body, but the impact it’s had on my life is massive.

I spent most of the beginning of the year in bed, clutching my duvet in an effort to still the world. I couldn’t focus on anything more than moving as little as possible. The dizziness was awful. The nausea was worse, and relentless. The headaches were both dull and sharp at the same time. The tiredness was even heavier than I was used to from ME/CFS. And I was so afraid. It’s a terrible thing when your mind literally cannot understand the world, as the lizard part of your brain becomes convinced that you are dying, and the lizard brain does not listen to reason. I only left the house to force myself to various doctor appointments.

Even through all of that, the worst part was that I could no longer read, write, watch TV, use my iPad, or do anything with my phone besides make calls. I couldn’t even listen to music. Whenever I tried, nausea would wash over me like a tidal wave, the world would tilt and spin, and my head would ache as if squeezed in a vice. Effectively I lost the possibility to distract myself, and to communicate with the outside world.

This lasted several months. No books. No movies. No leaving the house, except for fruitless medical appointments and stubborn, stumbling trips to the grocery store. No writing. No music. Just me, in a bed or on the couch, trying so desperately to be still.

I am no stranger to loss of function. I got ME/CFS ten years ago, and with that I lost being able to run and dance and perform. I couldn’t use my bachelor in music. I couldn’t have a regular, full-time job. I lost friends. I lost freedom, the ability to move through the world as I wished. It was like I had to stand by and watch as the world calmly, dispassionately took all this from me, and no amount of pleading or bargaining could stop it.

After years of numbing, sneaking depression, I started to build a new kind of life. Okay, I couldn’t run a band and perform live, but maybe I could still make songs and record them, with some help? Okay, I wasn’t able to hold a traditional job, but maybe my writing would still give me some kind of purpose and meaning? Okay, so I had neither the health or the economy to see the world, but I could learn to find joy in small things, like going to the movies or riding the tram aimlessly. Okay, so it was hard to be social and meet new people, but at least I could make sure I took good care of the friends I had. Okay, my world had shrunk, and I needed to alter my ambitions and desires — but there could still be something. It might still become a lovely life.

Then came the virus, and a whole new level of loss. No, Maria, you cannot escape into a book. No, you cannot ride the bus or a tram. No, you cannot talk to your frinds on skype, you cannot visit them, you cannot text them. No, you cannot look up your symptoms online. You cannot work on your novel. No, Maria, you cannot play music with your bandmate, or start to learn that cello you just bought. You cannot listen to music, not even in the crappy iPhone earbuds.

In the beginning I did pretty good. I was so careful with my thoughts, refusing to fall into depressive loops again. So I thought about my book, the world I had created. I thought about the small improvements I felt, like when I no longer was dizzy when lying still in bed. I found joy in small things, like the luxury of being clean after a shower. Time moved oddly during this period, as an hour lasted a lifetime, but weeks flew by and I hadn’t really done anything, nothing but wait. It was surreal, especially since I was so isolated from people. There were times when I thought I was literally going mad, just for the lack of connection, the lack of being touched. The hardest time wasn’t in the beginning, but rather when I became well enough to realize how horrible it all was.

Time did pass, though. My greatest victory was travelling north, to my home town, to stay with my mum for a month. After six months of dreading even a simple  bus ride, I armed myself with earplugs, sunglasses, breathing exercises and some helpful pills, and left. I’ve actually only just returned to Oslo, three days ago now. It’s been hard to be back, in a way, because of all the vivid memories, and because I can see how far I still have to go before I’m as well as I was before the virus.

The combionation of the virus and ME/CFS is tricky, you see. I haven’t been able to find any info about it online, and none of the doctors are familiar with it. Here’s what I’ve been able to piece-together-slash-theorize-about: ME/CFS in all probability “lives” in the nervous system. Some of my symptoms are extreme tiredness that cannot be “rested away”, hypersensitivity to light and sounds, and a slow and unstable immune system. The virus thing damaged the nerves between my right ear and my brain. The virus itself disappeared after a while, but my brain still has to re-wire itself, which is a slow, difficult process. The ruined nerves cause dizziness, nausea, fatigue, trouble focusing the sight, sensitivity to sensory stimulation (like light and sounds), and a very anxious lizard brain that thinks it’s going to die.

The main way to “handle” ME/CFS (there is no medication or cure yet) is to keep your body, particularly the nervous system, as rested and  calm as possible, and to not over-exert yourself. The best way to re-train your brain after this virus-damage, is to move your body, to do things that activate the connection between the brain and the body, like “walking on uneven terrain, or exercising”, as they say online.

You’re smart people — I don’t have to explain why this makes it incredibly hard to know what I can do to optimize my recovery.

Right now I can live somewhat normally, for me. I can shower, buy groceries, make dinner. Do laundry. Pay bills. I can even watch TV most days, and I can listen to music and audio books. Alrik and I have even had a couple of short band rehearsals in my apartment. I cannot, however, read books, or use a computer or an ipad or phone for much longer than ten minutes (I’m writing this blog post by hand, on actual paper, with frequent breaks to reast my eyes and brain and body). I cannot sit in cafés or spend much time in busy streets, since all the visual input and noise confuses my brain. I don’t feel comfortable on trams or buses, especially since I know I’ll be exhausted once I arrive; there are few places ou can travel to where they have a nice, dark room available for a quick lie-in.

And finally, it comes down to the ME/CFS, as it always does with me. I’ve basically had to re-learn how to live with it, since my limits and triggers have changed so much. Everything is so much more sensitive now. Resting after a grocery run isn’t just nice, it’s mostly mandatory. I cannot plan more than one “activity” a day, and I need to plan for much more resting days than I used to. Sunglasses and earplugs are lifesavers, not just comfortable. And as for re-building some kind of social life… I’m still working on that, too. I love my friends dearly, but it’s been difficulat to navigate such uncertain, serious waters, difficult for both them and for me. We are still young, after all, and lack both the experience and the language for such situations. But if there’s a will, there’s a way, right?

The two hardest things for me now are the uncertainty of my future, and allowing myself to grieve what I have already lost. Uncertainty is something we all have to live with, of course. And I am thankful for all the things I can do now that weren’t possible six months ago. I certainly don’t want to live in the past, either. But… my stories, my books. My music. My relative freedom. My people. My words.

I have no guarantee I’ll ever recover enough to get my pre-2017 life back. I might, but then again, I might not; I’m mostly worried about how this will affect the ME/CFS in the long run. That will affect my whole future, again, my whole life. And in the meantime, I feel so trapped. I am full of things I want to do and experience and create, but most of it has to just stay inside me, for now.

So I try, when I can bear it, to allow myself to feel that loss. To feel the loss, and what follows close behind: hesitant, desperate hope.

Post script: I’ve just finished typing in this blog post from yesterday’s handwritten pages, and I realize that this might be tough for some people to read, particularly the people closest to me. So let me just add: I did not write this to give anyone a guilty conscience, and I hope you all know how grateful I am to have you in my life. Writing is simply my best way of processing things, and this has needed processing for a long time now.